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Awake Seizures After Pure Sleep-Related Epilepsy: a Systematic Review and Implications for Driving Law Rhys H Thomas, Will H King, Ann Johnston, Philip Em Smith

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Awake Seizures After Pure Sleep-Related Epilepsy: a Systematic Review and Implications for Driving Law Rhys H Thomas, Will H King, Ann Johnston, Philip Em Smith Awake seizures after pure sleep-related epilepsy: a systematic review and implications for driving law Rhys H Thomas, Will H King, Ann Johnston, Philip Em Smith To cite this version: Rhys H Thomas, Will H King, Ann Johnston, Philip Em Smith. Awake seizures after pure sleep-related epilepsy: a systematic review and implications for driving law. Journal of Neurology, Neurosurgery and Psychiatry, BMJ Publishing Group, 2010, 81 (2), pp.130. 10.1136/jnnp.2009.181438. hal-00552789 HAL Id: hal-00552789 https://hal.archives-ouvertes.fr/hal-00552789 Submitted on 6 Jan 2011 HAL is a multi-disciplinary open access L’archive ouverte pluridisciplinaire HAL, est archive for the deposit and dissemination of sci- destinée au dépôt et à la diffusion de documents entific research documents, whether they are pub- scientifiques de niveau recherche, publiés ou non, lished or not. The documents may come from émanant des établissements d’enseignement et de teaching and research institutions in France or recherche français ou étrangers, des laboratoires abroad, or from public or private research centers. publics ou privés. Awake seizures after pure sleep-related epilepsy: a systematic review and implications for driving law Thomas RH1,2 King WH3 Johnston JA1,2 Smith PEM1,2 1. Wales Epilepsy Research Network, Institute of Life Sciences, Swansea University, Singleton Park, SA2 8PP, UK 2. Department of Neurology, University Hospital of Wales, Heath Park, Cardiff, CF14 4XW, UK 3. National Public Health Service, Mamhilad Park Estate, Pontypool, Gwent, NP9 0YP, UK Corresponding Author Dr Rhys H Thomas Wales Epilepsy Research Network Institute of Life Sciences Swansea University Singleton Park SA2 8PP [email protected] Tel: 01792 295134 Fax: 01792 602225 Keywords: Sleep; epilepsy; driving; awake; nocturnal Word count: Abstract 245; Article 3564; Combined 3809 Page 1 ABSTRACT Who with sleep seizures is safe to drive? Driving law is controversial; ineligibility varies between individual US states and EU countries. Current UK driving law is strongly influenced by a single-centre study from 1974 where most participants were not taking antiepileptic drugs (AEDs). However, pure sleep-related epilepsy is often fully controlled on medication, and its withdrawal can provoke awake seizures. This systematic review asked, ‘What is the risk of awake seizures in pure sleep- related epilepsy?’ 9885 titles were identified; 2312 were excluded (not human or adult); 40 full texts were reviewed; six papers met our inclusion criteria; each of these six studies had a different pure sleep-related epilepsy definition. Using the largest prospective study (D’Alessandro 2004), we could calculate next year’s awake seizure chance (treated with antiepileptic medication). This was maximal in the second year: 5.7% 95% CI (3.0 to 10.4%).European licensing bodies including the UK’s Driver and Vehicle Licensing Agency broadly accept a risk of less than 20% for Group 1 licensing. However this study excluded patients with frontal lobe epilepsies. Furthermore, follow-up (n=160) varied from 2–6 years, yet new awake seizures may occur even after 10–20 years of pure sleep-related epilepsy A paucity of evidence underpins present licensing law; current rulings would be difficult to defend if legally challenged. The law may be both penalising people with pure sleep-related epilepsy without increased risk of awake seizures, whilst failing to identify subgroups at unacceptable risk of an awake seizure at the wheel. Page 2 Awake seizures after pure sleep-related epilepsy: a systematic review and implications for driving law “I have known many persons in sleep groaning and crying out, some in a state of suffocation, some jumping up and fleeing out of doors, and deprived of their reason until they awaken, and afterward becoming well and rational as before, although they be pale and weak; and this will happen not once but frequently” Hippocrates, On the Sacred Disease, circa 400 BCE [1] INTRODUCTION Sleep-Related Epilepsy The relationship between sleep and epilepsy is both intricate and complex. Seizures from sleep have been recognised for as long as we had an appreciation of epilepsy itself. The International League Against Epilepsy (ILAE) defines sleep seizures as “seizures occurring exclusively or predominantly (more than 90%) from sleep.” Depending on the method of case ascertainment this estimate has varied from 7.5 to 45% of people with epilepsy,[2,3,4,5] with some estimates clustering around 12%. We define pure sleep-related epilepsy as seizures occurring exclusively from sleep; including seizures that begin in sleep and continue with the patient awake. Sleep seizures may be relatively benign, for example the childhood partial epilepsy syndromes: benign Rolandic epilepsy (three-quarters occur from non-REM sleep, mainly at sleep onset or just before awakening) or Panayiotopoulos syndrome (two thirds arise from sleep).[6] In contrast, some seizures in nocturnal frontal lobe epilepsy (NFLE) are not only recurrent but are challenging to diagnose, frequently mimicking parasomnias and having a high seizure reoccurrence rate after discontinuing AEDs.[7] Pure sleep-related epilepsy may be more likely to respond to antiepileptic medication[8] but equally some people with infrequent sleep-only seizures not interfering with lifestyle do not necessarily require AEDs. However, the risk of sudden death in epilepsy is greater for those with recurrent un-medicated Page 3 seizures, particularly if they sleep without a bed partner and there are published reports of people with epilepsy dying alone in their sleep.[9] Driving Driving is a privilege enjoyed by 63 per cent of women and 81 per cent of men in Great Britain (2006).[10] An inability or ineligibility to drive can negatively affect self esteem, reduce self sufficiency and dent employment prospects. Despite this, most countries legislate against those drivers at greatest risk of an accident when driving. Certainly any epileptic seizure could have a deleterious impact on attention, cognition and reflex response times. Uncontrolled awake seizures ensure that a driver is both unable and ineligible to drive in the UK. However there are an unknown number of drivers with ongoing generalised seizures who are legally able to drive: they have pure sleep-related epilepsy. The governmental body in the UK responsible for vehicle licensing is the Driver and Vehicle Licensing Agency (DVLA). They are also charged with deciding if a patient is legally able to drive. In many cases the answer may be apparent to their clinician after consulting the DVLA guide to medical rules, named ‘At a Glance’.[11] Although on-road testing can assess fixed disabilities, paroxysmal disorders, such as seizures, are less well suited; the proscriptive DVLA regulations are therefore of greater importance for epilepsy.[12] Medical advisory panels meet at intervals to discuss these regulations and it is in support of this process that we have undertaken a systematic review of the literature. Accident risk There are a number of legal driving situations where individuals are at a higher than average risk of a vehicle accident. In particular, male drivers under the age of 25 years are perhaps at five to seven times greater risk than the mean. Schmedding [13] has suggested that a relative risk of two (a risk equivalent to legal driving after 17 to 19 hours without sleep) may be an acceptable risk for people prone to unpredictable paroxysmal events. A relative risk of 2.1 equates to a risk of a seizure (at any time) of 20% a year, (RR of 1.5 to 10% and RR1.1 to 5%). Page 4 In the UK, people with seizures occurring only from sleep for three years or more are eligible to drive; providing that they have had two sleep-related seizures in the past ten years.[11] Surprisingly, there is marked diversity throughout Europe in the eligibility criteria for legal driving following sleep-related epilepsy.[14] Indeed, a 2004 report from the second EU working group on epilepsy and driving noted that eleven European countries had no epilepsy driving regulations at all.[15] Harmonisation of EU driving regulations is underway at present; however, nations retain the ability to interpret the rulings more cautiously.[16] World view In Japan in 2002 for the first time people with epilepsy could apply for a licence if they were seizure-free for two years: this included people with pure sleep-related epilepsy for two years’ duration.[17] US licensing legislation varies between states. Krauss (2001) noted that Utah permitted driving after 3 years of pure sleep-related epilepsy and fifteen states considered “nocturnal” seizures as a mitigating factor when considering ineligibility.[18] It is presumed (but difficult to ascertain) that here the word ‘nocturnal’ is being clumsily used to be synonymous with sleep-related seizures. In Australia, the twelve month ineligibility for people with sleep related seizures was scrutinised in the courts.[19] Beran’s discussion of a case where someone with pure sleep-related epilepsy failed to disclose that he had epilepsy to the licensing authorities also includes a detailed description of a vehicle accident occurring following a generalised seizure at the wheel, ten years after his last reported awake seizure. The UK requires a thirty-six month period of pure sleep-related epilepsy before driving can resume. In contrast the observation period is twenty-four months in Belgium and Republic of Ireland, but sixty months in some cases in Sweden.[15] Belgian law[13] in 2002 recommended day-time driving only. Perhaps this represents a semantic error, confusing nocturnal and sleep-related seizures. Attempts at reducing the risk of an accident for higher risk groups (driving fewer miles, avoiding Page 5 motorway journeys or not attempting right turns across traffic) have thus far been avoided by legislators. In 2004 after a review of the available published evidence the working group recommended that a period of pure sleep-related epilepsy of twelve months may be sufficient before driving resumes.
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